D Ehrmann Feldman, B Swaine, J Gosselin, G Meshefedjian, L Grilli

1. Waiting for Rehabilitation Services inChildren with Physical Disabilities: Effects on Child Function & Quality of Life D Ehrmann Feldman, B Swaine,J Gosselin, G Meshefedjian, L Grilli

2. Background • Early rehab believed beneficial for children with neuro-motor disabilities. • Lengthy delays to receive rehab reported. • Delays may be associated with: • delayed diagnosis, lack of definitive diagnosis, age of the child, severity of the child’s condition, service availability and organizational factors.

3. Background • Care of children with disabilities is physically and psychologically demanding. • Delays in receiving services may impact on both the parents and the child. • Services are insured by the publically funded health care system in Canada, but parents may pay for private services.

4. Objectives • To explore whether longer delays for rehab were associated with decline in child functional status and/or parental perception of child’s quality of life. • To assess whether parental empowerment changed over the waiting period.

5. Methods • Study population: parents of all children (2-9 years) referred over an 18 month period to out patient PT or OT at five local rehab centers. • Children with only cognitive problems were excluded. • Participants identified from hospital central referral databases.

6. Data collection • Parents contacted to participate in the study. • Interviewed every 3 months until admission to the rehab program. • First interview face to face; follow-up interviews by telephone.

7. Parent Interviews • Study questionnaire: sociodemographics, service utilization. • Functional Independence Measure for children (WeeFIM: quotients for 3 subscales self-care, mobility, cognition) • PedsQL4.0 – Pediatric Quality of Life Questionnaire (2 subscales: psychosocial and physical health summaries: scale 0-100). • Family Empowerment Scale: Service System Subscale (12 items).

8. Analysis • Descriptive statistics. • Multiple linear regression to model change in scores as a function of delay, adjusted for diagnosis and receipt of private services while waiting. • Change in scores: final score minus score at initial interview.

9. Results (n=124)

10. Results

12. Association between waiting time & change in scores over waiting interval

13. Discussion • Half the children waited > 9 months. • Function improved but psychosocial quality of life declined over the waiting period. • No change in parental empowerment.

14. Study Limitations • Parent self-report • Length of follow-up for each child depended on when admitted to rehab. • Adjusted for age and diagnosis but there may be other confounding factors. • Observational study: cannot assume that decreasing waiting times will improve quality of life.

15. Impact/Significance • Rehab specialists may need to pay attention to psychosocial quality of life and participation. • Reducing waiting times for rehab will allow these to be addressed in a timely fashion. • Need for implementation and evaluation of rehab strategies on improvement of psychosocial quality of life.

16. Acknowledgements • Funded by the Fonds de la Recherche en Santé du Québec (FRSQ) and the Canadian Institutes for Health Research (CIHR). • Dr. Debbie Ehrmann Feldman was funded by CIHR, and is currently supported by The Arthritis Society. • Mélanie Couture and Marie-Noëlle Simard for data collection. • Families who participated.